Caregiving is Universal

I had the most amazing conversation the other day. I play a silly online game, not going to share the name as you will all fall off your chairs laughing and sue me. Not really, but just to be safe, fasten your seatbelts.

First you have to understand something about me. I am a pacifist. I hate guns and violence. Intellectually, I know they are necessary….but ya know….intellectualism is not all it is cracked up to be. So I shudder and wave at the nice policeman and think to myself, thank god that is not me. Then the war started and no matter what I think about how or why, I know I love those soldiers and wish them the best. I also know they are someone’s baby and the people we are fighting are also someone’s baby.

So while merrily going along and playing my game I made a friend. At first you don’t share much, just play the game together. Then as you run into one another more and more, you begin to talk. I learned he is a soldier and in Iraq. I cried. I could not deal. I ran away. And he let me.

Soon, we ran into one another again and we chatted again. And he told me about being in the army and being in Iraq. We started to share and I realized we had the same story to tell. Okay, not identical, his is much more dramatic; but so many similarities.

Soldiers on the front lines have problems sleeping, like caregivers they are waiting for the “bad thing” to happen. None of us know what it is and cannot prepare for it, but we know it is out there.

Soldiers form attachments to one another. They share a bond, a common experience, that others can appreciate, but never truly understand. Caregivers are similar, we immediately feel that connection with one another and understand.

Soldiers have survivor guilt. Need I say more? Caregiving is fraught with guilt, we don’t do enough for anyone, but we do all we can. We set ourselves up for failure.

As I talked to my friend about his experiences and my experiences, the differences melted away; and I realized we were taking care of another. It was more than a support group meeting. This was someone isolated, alone and under pressure reaching out for someone to love them and say “Good Job”. And then I realized, that person was me. So there we were, a 40 year old woman who is afraid of guns in Alaska and a 25 year old professional soldier in Iraq. Reaching one another, healing one another and we never even met. Who knew?

Been too long

I have been away for so long. Not physically, just mentally and emotionally. Just seems that end of the summer took me away.

We have hit on a new complication to dementia. Relationships within the family. How do you keep them alive while dementia is ripping the fabric of your life. Sounds ominous....... But it is where my head has been.

Kids
My daughter has gone to college. I took time, flew across the country and helped get her established. Walking away that last day was one of the hardest things I will ever do. Cried all the way off campus. Faculty would nod and smile and whisper "There goes another freshman parent." I know I left her in a good place with great people......but my role as her caregiver/parent has just been greatly reduced. Now my role is ATM/cook/laundry goddess.

Dad
His dementia is increasing. But his health is strong and we can look forward to more years together. All that is good stuff. But he has started choking. Of all the gifts dementia has given me, choking is the one I appreciate the least. Choking leads to pneumonia which leads to hospital stays which leads to............ We just won't go there.

Spouse
I am just tired. Very tired. Which makes it hard to be a caregiver for my spouse. I see his list of wants/needs and find it hard not to shriek... How do I say do your own laundry for a change, can't you see I am ______________. But no, I do it and I smile and I add it to the list of grievances.

So, who has been there? Haven't we all felt that way one or more moments. Well, feel the pain, acknowledge it and move on. We cannot wish caregiving away. We have accepted this role. Remember we do it out of love and a sense of duty. But we CHOOSE to do it. This is where the buck stops.

So take your moment. Have your pity party (with icecream even) but move on. If you don't push through it, you will be stuck with it. And I choose to push through and get to the good stuff.

Novel Long Term Care

I heard a debate on the merits of long-term care. We all need to have a plan but the growing epidemic of those needing care has clearly shown that plans of the past are inadequate. They either were not inflation proofed or didn't cover in home care. So feeling little sad I began to ponder various plans hoping for inspiration. Well it hit....

Long Term Care the Carnival Way
This plan has so many upsides that the downsides seem negligible. You get on a cruise ship, who cares where it is going and just don't get off. You cruise through various designations. You will have maid service, meal service, an on-physician, companionship and on-board clergy should you perish. What more can you ask for? You don't have to put up with your children or neighbors. You have a staff at your beck and call 24/7. Nice, huh?

Prison
This option is not for the feint of heart. First you would need to do a little research and find the nicest prison, don't want to go to a yucky one. You know, the millionaire beach club jails. Commit a little crime and wait for the police to show up. Don't resist arrest, you might get hurt. And allow yourself to be taken to prison. Meals, exercise, companionship, medical care and educational opportunities. The trick is finding the RIGHT prison.

Federal Witness Protection Program
This is the toughest of the programs as it requires some real planning and excellent timing. First become friendly with the local mafia don. In NJ, this is fairly easy, for those in the midwest you might need to do an internet search or relocate. Make friends, hear a secret or two and then call the Justice Department. Volunteer your services (and if you don't have the real goods fake it) and suggest your placement in the program. Voila!

Caregivers are tough cookies

We are mortal and frail just like everyone else. No you say? Heresy? I think not.

Because of the nature of our the lifestyle we have chosen, most of us develop Superhuman Tendencies. We expect ourselves to be on call 24/7, keep an immaculate house, cook gourmet meals, our outfits match, our make-up perfectly applied and our loved ones happy and healthy. In our spare time we should garden, run errands and by the way have a personal appointment or two. Does any of this sound familiar??? I thought so.

Guess, what? You cannot do it all. I recently had an eye opener at the dentist. I had a tooth that was bothering me and I realized that it had been awhile since I had been to the dentist. While in the chair, did I mention I hate the dentist?, they discovered I still had my wisdom teeth, did I mention I hate the dentist and a big old cavity. Long story short I found out I need to have my wisdom teeth extracted and the other tooth as well.

While trying to schedule the next appointment I realized I would have to wait 2 weeks, because my slots were filled with kid stuff and dad stuff. Then I realized that I may be medicated and start asking the questions. How much medication will I need? How long to recuperate? How soon can I talk? And then I explained that I could not be out of commission. The dentist looked at me in shock. I don't think many patients say, the earliest opening I have is at 2 pm, 2 weeks in the future. I then said, if it takes longer than a day, I am not going to have the procedure done.

The dentist talked me down and I realized I was being a little unrealistic. But what if I were sick? What if something happened to me? This thought is scary, because it is no longer just about me. Yes when you are a couple or a parent, it is not about just you. But when you are a caregiver, just you no longer exists. And in light of that many of us err in the favor of our loved one. Our appointments wait, our time for ourself waits, everyone else comes first.

But, I have come to realize this is not the best method. That is the path to guaranteed burn out. We HAVE to take care of ourselves and sometimes put us first, in order TO care for our loved one. By taking time to care for our needs, our appointments, our health we are prolonging the time we will be able to care for our loved one. Isn't a few extra months with our loved one worth a check up, a wisdom tooth extraction?

On the way to bed the most interesting things happen

Funny how it works that way. I don't know what it is, but when Dad is tired it all goes haywire. The past, the present, hallucinations and dreams all mix together in one fuzzy landscape. I guess you could say dementia is where the line between reality and fantasy blurs.

This morning Dad woke up in full sundowner mode. The whole deal anxiety, disorientation, fear determination to complete the mission all at the same time. This morning it was my Grandmother. Dad thought he "abandoned" her in the car. (She has been dead for years and her cremains are in his bedroom waiting to go to NJ). I tried everything but nothing was working. I realized I was going to be late for work. I guess I forgot to mention that I was in the shower getting ready for work when this all began. My first priority was to deal with it dry and clothed.

Finally, Dad suggested that she might be home. I seized the opportunity, grabbed the phone and called my boss. I explained that it was me and I was so glad she (my grandmother/boss) was okay and answering the phone. I asked Dad if he wanted to talk to her and he said no. I then said I would be leaving for work soon. This ploy killed 2 birds with 2 stone. 1 calming Dad down and 2 telling everyone I will late.

I sat in Dad's room and waited for him to go to sleep. I sat quietly watching him fight sleep. Finally he looks at me and asks where everyone is. Reassuringly, I explain this is my house and we are all here. He looks around with astonishment and says, this is YOUR house, why did you buy a factory? You own the whole thing? He was amazed at my good fortune and bad taste simultaneously.

I explained the workers were in the factory part, but we lived in the dorm. Satisfied he drifted off to sleep and I went to work as fast as my little car would take me. So many times going to work is less than.............the glorified existence we dreamed of as youngsters, but today it sure beat the running herd on the factory workers and the domestic front. I guess you could say work is my respite. How often do we get to say that?

It is not about me

I think one of the toughest challenges of a caregiving is having to care about things you really are not interested in. How is that for a little honesty?

Think for a minute, our loved one led a life that was separate from ours prior to needing help. We each had our own circle of friends, activities and interests. For instance my husband loves chess, if he were to need my care it would be important that I play chess with him, take him to chess activities, keep him involved in chess for as long as possible. And let me tell you, that would be a life sucking endeavor (for me) (sorry chess-aholics). Now if I were the one to need care, my husband would need to take me knitting. I would want to go to the yarn store and suck up the atmosphere, feel the yarn, talk about knitting, hang out with the knitters; which in turn would be grueling for my hubby.

But once our loved one passes into our care, their passions and past times must become a part of our life. It is this connection with their former self that helps keep their spirit alive. I have said it before and I will say it again, anyone/anywhere can keep our loved one's shell alive (the body) but it is our unique connection with our loved one that keeps THEM alive.

A Unique Twist

Now this has happened in the past but it is happening more and more frequently. Dad is lonely and I am struggling with finding new ways to combat his loneliness. This is kinda tough when your short term memory is shot to hell. Not to mention Dad is confusing me with his sisters, his mother and his wife. Now being his sister or mother is relatively easy, but being my Mom has its challenges.

For instance Dad is lonely and wants someone to sleep with. I bet you know where I am headed and it is a slippery slope. When Dad gets sleepy he wants to know where he sleeps and when I will be coming to bed with him. He is not being inappropriate as he really thinks I am my mother and it is perfectly appropriate for us to sleep together. But I know I am not his wife and my reaction is

1. Ewwwwwwwww
2. I am a dirty girl.
3. Ewwwwwwwww.
4. Distract him Debbie, distract him.
5. Ewwwwwwww.
6. We have now entered the ice cream emergency zone. Get the ice cream STAT.
7. Ewwwwwwwwww.
8. Did I say ewwwwwwwww?

I have learned how to handle it though. I casually say "I am Debbie your daughter and that would be icky." Note the technical term there, icky. The key is I cannot react. If I react (the way I want to, which is to run screaming in the other direction and finding a psychologist) he will become upset and realize something is off. If I calmly say no and reinforce who I am, all goes well. And once Dad is in bed, I hit the ice cream HARD.

Memory is a tricky thing

Last night Dad remembered that he had been married and his wife died. Up to this point I eagerly looked for those lucid moments, those moments where he was there. Yesterday he came through for me, but with a sad memory.

I told him about my mother's death and how he came to say goodbye to her at the hospital. I explained how his dementia caused him to roll with one of life's biggest punches, the loss of your spouse. He asked me if he grieved. I was stumped. What I finally went with is, explaining that his dementia caused him to be very matter of fact. I explained that he went in and held her hand. He stroked her arm. Felt her hair. Then he looked at me and said "Hmph, she is already cold". I explained that his dementia allowed him to fast forward (so to speak) through the grief process.

Was I right? Has he really gone through the grieving process or is it just beginning? I don't know. What I do know, is he is lonely and in a way that I cannot fix. I cannot find someone to share his bed at night. I cannot recreate a partner and a relationship that spanned 40 years. So what do I do now? How do we move through this new road block?

Well, we are going to talk about it. I am going to keep explaining his dementia. I explained that I had newspaper articles about everything that has happened, and he told me not to show him the articles, it was too much. So I know tempering what I share is the right path, but how much is too much and how much is not enough?

There is no right answer and there is no quick fix. When my Mom died, Dad lost his partner in crime, his life partner, his business partner, his...........partner. The trick is going to be reconciling this loss with someone who has no short term memory left. He cannot turn events, thoughts and words into long term memories. Like all else this will run its course, I know that. But this is where the caregiving begins. This is the "Big One" or as presidents might say "The Mother of Caregiving Dilemmas". This is where I will earn my caregiving stripes. The question is am I up to it?

A group of 2 is all that is needed

Support groups come in many forms, the formal ones we join, lunch with friends, dinner with families and even..............at the grocery store. Maybe it is just that I am more aware of the numbers of caregivers because I tell you they are everywhere. There is no prototype or stereotype, they come in all shapes, sizes, colors, genders, ages......every possible combination has a caregiver and someone needing care. It is one of those gentle miracles that we can miss.

How many times do you go to the grocery store and not talk to any of the employees? How often do we mechanically greet the kid at the counter with the nose ring? As you shop for that new pair of pants do you avoid eye contact with the employees? I know I am very guilty of it. Just get me in and get me done. Well once again I had the karma kick me in the rear.

June 5 is the anniversary of my mom's death. This is still a hard day for me. I doubt I will ever not associate the date with her, but it is getting easier. I almost didn't cry this year. To celebrate her life I bring ice cream to our local firemen as they took her for her last ride. So in the early afternoon, I go to the grocery store to buy supplies. My order was hilarious to an outsider but caught up in my woes I couldn't see it (you know the whole forest for the trees thing). My order consisted of

• 2 half gallons of vanilla ice cream
• 1 half gallon of coffee ice cream
• 3 half gallons of chocolate ice cream
• 1 half gallon of strawberry ice cream
• 1 jar of chocolate sauce
• 1 jar of hot fudge
• 1 jar of caramel
• 1 jar of cherries
• 1 Diet Pepsi

Can you imagine what it looked like? Well the lady in front of me at the register found it very funny indeed. She kept watching as I unloaded on box after another of ice cream. Finally, she cracked. She told me it looked like I was having some party. I thought for a minute and proudly said "Yes I am". I explained who the ice cream was for and why.

This unbelievably put together woman, I mean she had it going on. Shoes, hair, nails, clothes all of it, loses it right there in line. She chokes up and shares that she lost her mother in February (4 months ago at the time of this writing). Immediately, we had a bond. We knew we had been in the same place and were both coming out of it. What a blessing. We talked, we hugged and we both left the grocery store with a little more than we planned.

The Plan

So now you have read everything out there and feel pretty confident that you understand what you are facing and have begun to think about how you are going to handle it. Now the hard part is coming. You have to create a plan of care for your loved one. These are those big decisions that normally you could put off a bit until you get used to your new normal. Unfortunately, these decisions need to be made so you can create your new normal. Start small and build. This plan can evolve and change over time, but the skeleton if you will, remains intact. The plan should include:

1. Legal documents that must be completed (living will, advanced directives, will, power of attorney, trusts, Medicaid etc). For this one you really need a good lawyer. An Elder Law Attorney worked for me, as we had no money to deal with thanks to World Comm, Enron, Lucent Technologies and the boys at MCI Cap.
2. Decide how to tell friends and family. This is a quiet conversation between you and your loved one. Good food, quiet music and loving words help.
3. Evaluate your home. As the illness progresses will there need to be renovations to your home? Would it be best to move somewhere else?
4. If you or your loved one is working, how long will you want to work?
5. Grieve.

I know the last one sounds funny, but to me it is the most important. If the illness is not going to be cured, you especially have to get a handle on your grief. I found it was much easier for me if I embraced the disease, said goodbye and made a conscious decision that I was going to sleep, eat and walk this disease for as long as my loved one was with me. When I got my heart and head around that concept, the pain lessened. And when the pain lessened I was able to breathe normally again.

That act of working through your grief allows you to embrace your loved one. In my case, my Dad has Alzheimer’s. I know he will no longer be able to interact with me at some point in the future, until I came to terms with that reality I was in agony, focusing on my Daddy is dying. That kind of pain is paralyzing and does not help anyone. There is no contest that provides a prize to the one with the most pain. (Actually, there is but it is called a nervous breakdown and the prize is a handful of pills.) Once I stopped focusing on his death I was able to focus on his life and the quality of life that still existed.

Don’t Make any Rash Decisions

Whenever someone has a life changing event, a death, a kid goes off to college, a new job, moving etc; the one piece of consistent advice they are given is:

“Don’t make any big decisions. Get used to the new normal.”

Ironically, the one thing you have to do when faced with a serious illness, is immediately make big decisions. You have to develop a plan and get that plan in place. So here you are faced with what could be (and many times is) a devastating diagnosis and at the same time you are given a to-do list. Are you not under enough pressure without being given chores? Most of us at this moment, want to pick up our toys and go home. We don’t want to play any more. But life being what it is; we have to keep going.

The first step is information finding. Use every resource you have to get all the information you can handle, and then get more. Talk to your doctors, talk to organizations, find support groups, surf the net, talk to friends and neighbors, let the world know you are looking for information. Once you have all the information, you have to read and absorb it. Don’t panic yet. Some of that information is written by doomsayers and should be discounted. Find the middle of the road and positive information and then go back to the source and ask for more if you need it.

Remember, the folks producing the information have an interest and knowledge base in that area and are generally willing to share what they have. Web sites are invaluable resources as they are easily updated and usually have contact information so you can go right to the horse’s mouth so to speak. Be warned though, as websites are not regulated there is not a quality assurance program so the information on the web can easily be outdated and less than accurate. That is why you need several sources and to pull it all together. Facts will be repeated and inaccuracies will become obvious spotted.

More to come.

Funerals

This has been a busy week, graduation and 2 funerals. I guess I am hitting that point of life where we celebrate the birth of our children's children and the life of our friends and family that have passed on. I used to dread funerals, so sad, so much pain; but not any more. It may sound trite but I truly see funerals as a celebration of the life that was lived.

The first funeral was for a friend's mother. The mother had Alzheimer's and had not been able to speak for some time. But this daughter loves her mother and even if she could not speak they were so able to communicate. They truly did not need words. The daughter's anguish at losing her mother was obvious to all, but she could not see how her relationship and devotion to her mother enriched all our lives.

Being in the same room with these two was an experience not to be missed. The congregation at their church may not have not their names, but everyone knew the "beautiful woman in a wheelchair and her daughter". And her mother was a beautiful woman who's smile lit up a room, even in photographs. Their relationship was a reminder to each caregiver there, how important our contributions are. It is not in vain. So read and heed. You are doing something amazing and one day you will have the distance and perspective to see what a wonderful loving gift you gave not only your loved one, but the world. Every time you are with your loved one in public, every support group meeting, every appointment is a living testimony to your love and devotion.

The second funeral was for a young man (young becomes relative as you age, he is younger than I am so he is young because I am NOT old). What was sad about his death was the number of people that loved and respected him and his inability to see that. So my heart goes out to his family as they were never given the opportunity to caregive. At the same time I am grateful that my father has given me the chance to care for him and hopefully your loved ones have given you the same opportunity.

So onward and upward caregivers everywhere. Take pride in what you do. Be grateful for the time you have. And remember, you are setting an example and giving others the confidence to care for their own. You are part of a circle or a web (hate spiders but can use the web analogy without cringing too much) that is dependent on one another for success. So thank you.

Graduation

My daughter graduated from high school this week. What a lovely moment. I had a wonderful time and amazingly so did my Dad. I was a little worried, concrete stairs, confusion, crowds.... I really thought it might be a little much for him. But he sailed through the ceremony like a champ.

On the way home, we were talking about the ceremony and he turned to me and asked:
"Did you enjoy the movie?"
Hmmmm, Dad thought it was a movie, okay. I can go with that. "Yes Dad I enjoyed it very much.:
He then asked if I understood the ending.
It occurred to me that the flow of the ceremony, really did not make sense. All formal pomp and circumstance and then once the graduate had their diploma, mamas and papas were hugging and kissing their babies and friends were hooting and hollering.
"Yes Dad, I did get the ending, everyone lived happily ever after."

He really didn't care about the ceremony per se What mattered to my Dad, was the spirit of the event and thinking about it, I could say there is a happily ever after for those kids. Maybe not the life they envision now, but the possibility of "happily ever after" is there for each of us.

But once again Dad surprised me,he was not done with his lessons for the night. He looked at me and asked "Where is our baby?" I knew in that moment my daughter and I were tangled in his brain and he needed to know there was a happy safe ending for us. I told him not to worry his baby was peacefully sleeping and happy. He nodded and said "Good".

So I believe and my Dad reaffirmed that "happily ever after" does exist and is there for each of us. We just have to recognize it and not get caught up in a preconceived notion of what it will look like, sometimes "happily ever after" is not the size, shape, color or financial status we once envisioned.

Most Powerful Woman in the Nation

Who would that be? The power to leap tall buildings? The power to control the fate of the nation with just one phone call? Well that would be me. Yep, I am feeling pretty proud of myself right now. Who knew?

Dad and I were sitting in the living room mulling over life while we waited for the roofer to show up for our estimate. Soon Dad starts to make distressed noises. And our conversation goes something like this:
"Oh dear" Dad says
"What's up?" I ask
"I don't want to go back" he answers.

As this is out of the blue I am trying to figure out where we are, back to college, the army, his mother's, etc. And you can't just ask as I would look silly to Dad.

So, I matter of factly say "Then don't go."
"Oh I have to go" he replies.
"No, you don't, you are special, you don't have to do anything you don't want to do."

Just as I feared Dad looks at me like I have lost my mind. At this point I figure the jig is up.

Dad very seriously explains that he has to go back to the Army. His pass has ended and if he does not go back, he will go to jail. Now this is new territory to me as I have never faked a war before. (Dad attended atomic blasts in Nevada during the Korean War.) I don't have any spare atomic weapons laying around so I am going to have to do some fast thinking.

"Well Dad" I say. "We will just call them and quit."
"You can't do that" Dad says scandalized.
"I can." I reply matter of factly.

So I pick up the phone, press some numbers and begin the following monologue.

"This is George Jackson's daughter. (pause) Yes, his social is xxx-xx-xxxx. (pause) He is a Corporal (pause). Well, he doesn't want to be in the Army anymore. (pause) Yes that is right. (pause) Well, thank you very much. Please send all final paperwork or his belongings to our address. (pause) Thank you.

Then I turned to Dad and said, you are out of the Army. Dad looked at me and said "Well I guess I will take a nap then." And off to bed he toddled.

Mother's Day

With Mother's Day approaching I have naturally been thinking about my Mom and how the torch of caregiving was passed on to me. My Mother and I always put my Dad first, if a choice had to be made, Dad won. All my life. This is not necessarily a bad thing, just something I have come to see.

One of the most salient examples is caregiving itself. My Dad had a heart attack and was in the hospital and he was very ill. Unfortunately, at the same time I became ill and had to be hospitalized. My poor Mother didn't know where to go. She knew she was going to be at the hospital, but which room? Bet you are dying to know how it resolved itself..........

Okay. After a day or so I began to feel a little better and explained the situation to my nurses. I asked to have my IV removed or at least heplocked. (You know, when they disconnect you from fluids but the IV is still in place, just in case.) The nurse agreed and I moved in with my Dad! Yep, I went down to the unit where he was (it was an in between unit, not ICU but not regular) and took up residence in his chair. The resolution seemed so clear to me. Mom cannot be in 2 places at once and Dad could not move, so I did. I left the room number with the nurse and if the doc or the nurse needed me, they came to me in my Dad's room.

A week or two later my Dad was still very ill and I had to have an operation in a different state. It never occurred to me that my Mom would come with me. I made the flight arrangements, hotel for a day prior to the surgery and a few days after to recuperate before flying home. Little did I know my Mom was beating herself up for not being in 2 places at once. Silly caregiver.

Believe it or not, a couple of years later we were in the same place. Dad could not stay alone and Mom had to go to another state to investigate a liver transplant. I knew I couldn't leave my Dad alone, but my Mom was supposed to go to the appointments with her "support person". Now it was my turn to beat myself up for not being in 2 places at once. What was I going to do?

Well, people in your life amaze you. I may not have blood sisters but I do have heart sisters. One of these beautiful women stepped up and took my place with my Mom. Neither my Mom nor I could ever express our gratitude to Ca'Trena, but I believe she knows. I also believe she knows how important she has been in both of our lives. My Mom came back with funny stories of the hospital with Trena. There are times when only family are allowed, but no one has ever questioned that Trena is family. She may be a beautiful, tall, black woman and we may be small white women, but we were solidly family.

And yes, Trena, you did remind me that I have grossly under-represented your contributions, so Happy Birthday and I love you, unconditionally. You stepped up when I was lost. You supported me during the crazy times and helped me to get my act together to take care of my Dad.

But what I want to say, is caregivers are so good at punishing themselves with:

• If only I had......
• I should have........
• I wish I had........
• What if I had............
• I could have done _________ better.

Those thoughts can drive you nuts. Not only drive you nuts but eat at the strength you use to "get through the day". Not every moment of caregiving is glorious, sometimes it stinks, and if you punish yourself with those thoughts you are ultimately cheating your loved one. Forgive yourself, move on and remember none of us are alone.

Caregiver's Anthem

To the tune of "I Will Survive"

At first I was afraid
I was petrified
Kept thinking I could never live
Without you by my side
But then I spent so many nights
Helping you to hold on
And I grew strong
And I learned how to care
And so you're here
Not somewhere else
I care for you with all the love
I have to share
I am so glad you are with me
And I don’t have any worries because you’ve shown me how
If I had known in the beginning
What joy this would bring

Know your life still has meaning
Just look around here now
'Cause you're so very loved
I thought I would hurt helping you say goodbye
I thought I’d crumble
I thought I'd lay down and die
Oh no, not I
I will survive
As long as I know how to love
I know I'll stay alive
I've got all my life to live
I've got all my love to give
And I'll survive
I will survive

It took all the strength I had
Not to fall apart
Kept trying hard to care for you
While sharing joys in my heart
And I spent oh so many nights
Just feeling sorry for myself
I used to cry
But now I hold my head up high
And you see me
Somebody new
I'm caring for you because
I’m still in love with you
And you are not a burden to me
And you love has set me free
But now I'm using my caring
For someone who's been loving me

Best Manners

I realized something about my Dad today. I have often wondered why he is so calm and peaceful, I know drugs but besides that, his whole demeanor is calm and peaceful. Last week I had an epiphany, my Dad is using his company manners.

My respite angel and I were talking about Dad and some of his recent losses of comprehension. She remarked how sad it was because you could see him trying to piece it all together. She then went on to comment on what a gentleman he is, how polite and considerate. Now to be honest, it is NOT my Dad's nature to be that way, so I laughed to myself. But I started thinking, and trust me no good comes from me thinking!

I realized he acts just as he has when I was little and we would go visit relatives. He was polite, he waited to be asked or would request refreshments. He would visit until he was done and then he would leave. His leaving was with very little ceremony and sometimes folks were lucky to have him say goodbye.

This is EXACTLY his current behavior! I used to get a little frustrated and think, the juice is on the counter for once could you pour yourself a glass? Well guess what folks, no he can't. Not because he doesn't have the CAPACITY anymore, but because it would be IMPOLITE! What a revelation for me. He may have owned this house at one time, he may have lived here for 12 years, but he is a guest in his mind. So when I begin to feel the tugs of caregiving and little nagging voice starts up, I shut her up and remind her I have to put on my hostess manners to match Dad's company manners.

It takes a village to be a caregiver

What a beautiful phrase and so versatile. It takes a village (fill in the blank). You can say anything, even nonsensical stuff and someone somewhere will sagely wise their head in agreement. So it takes a village to be a caregiver (all nod now). A caregiver interfaces (I love tech speak) with all types of people in a variety of situations. The secret is bonding them to you and your cause (your loved one) and getting everyone on the same page. Here are some tips:

Medical personnel

1. Just because you read a reader's digest article on an ailment does not mean you or your loved one has it, nor are an expert on it.
2. Take a moment to say Hi to the staff. Believe it or not, the person in the next room may have just yelled at them, puked on them, spit on them, peed on them or all of the above. You take that moment to set the tone and it will give you some control over the interaction.
3. If your loved one is in the hospital, see if you can stay with them. If not, enjoy the break and leave a set of instructions. Those little notes are worth their weight in gold.
   
4. Don't assume anything, write notes, ask questions, but become a partner with the medical team.
5. And remember like all relationships it takes work. My Dad's poor doctor was screamed at in a hospital and called all kinds of vile names. The reason, his patient had enough and was ready to go, his daughter's were not ready and blamed the doctor.

Emergency Workers

1. Firemen and policemen can be our best friends.
   
2. At the end of my mom's life they were calling them so often they volunteered to change the light bulbs so my parent's wouldn't try and climb a ladder, fall down and call them. Proactive these guys are.

Grocery Store

1. I don't know about you, but the grocery store seems to be the one place I take my Dad frequently. They all know us and work with us.
2. I spent a little time with one of the cashiers and explained my Dad and our situation. Now, they open up lines for us so Dad doesn't have to wait. They also understand if I leave in the middle of the shopping (or checking out). They just hold it until Dad is changed and then load it in the car.

I take every opportunity to talk about this wonderful journey we are on and do my best to involve those we interact with. Everyone I come into contact knows that my Dad is with us and takes a moment to talk to my Dad and have an interaction. This alone enriches my Dad's life and those that interact with him. If my Dad has a conversation I can see how virtual strangers light up and feel that they have done something special. Which they have.

As a trained economist

Which means, I went to school studied economics but never really found a job. But, as a trained economist one of the tricks you learn is cost/benefit analysis. For every decision that is made in life, in the marketplace, in school, in the workforce, whatever each of us does a cost/benefit analysis is in our decision making. If I do X, Y will happen and is X then worth doing? Well, caregiving has its own cost/benefit analysis. Mine goes like this:

COST

• Having Dad at home with me means I cannot work full time anymore.
• Having Dad means less quality time with my husband.
• I lose my peer group.
• I have to manage my Dad's medicines.
• I have to monitor Dad's health.
• I don't get to travel.
• I miss my friends.
• I became an orphan with a living parent.
  
• I feel sad.
  

BENEFIT

• Do I really want to work full time? NOT
• Frankly, quality time with the hubby can be over rated. Not so much honey, love ya!
• Peer group, schmeer group. The silver set is a hoot and frankly I like some of the outrageous remarks and freedom that dementia provides.
  
• With my AARP benefits I can get prescription coverage, wonder if they cover birth control pills............
• But he has some great pills (2 for him, 1 for me.....). My personal favorite is the orange football shaped one.
  
• How much fun is it to tell a new nurse that your Dad has a funny looking mole in his groin area. She begins with shock and horror in her voice "Why are you looking there?"
• Every day is an adventure with Dad.
• I get to make and maintain new relationships over the internet or within my various caregiving groups.
• I gained a friend in my Dad. Never would he have shared with me the stories I have heard in our previous father/daughter roles.
• I don't have time for a pity party.

So what this means, is when I add the psychic costs and the benefits of being a caregiver, it still makes sense to keep Dad with me. Knowing full well and embracing the concept of yes there are losses and there is toll on my life, I still come out ahead. And that is without even considering the benefits for Dad.

Survival of the fitest

Funny title, huh? But you know that Darwin guy, just might have been on to something.

I was talking to our respite angel. This woman is so many things to my family. Quasi Grand Mother (notice all in caps as it is such a special title) to my children, Mother in Deed for me and Friend for my Dad. She steps in and helps in more ways than I can count and I would truly be lost without her love, guidance and support. (That Hallmark moment was brought to you through support of your local Alzheimer's Agency.)

But we were talking today after I got home from work (my favorite part of the day). She mentioned how she worries if her clients are out of her sight too long. She then shared that the family member confided that he was fine in the bathroom and they would hear if he fell. I laughed at the irony of the situation and will explain why.

I have always seen our respite angel as the be all and end all of caregiving. If I had a question, she had an answer as she has been doing this for years and nothing surprises her. And even with all her years of experience, I realized that she goes home at the end of the day. I as the primary caregiving, live it 24 hours a day, 7 days a week, with no time off for good behavior. So while my respite angel is still my role model, I saw a difference in our experiences that had never occurred to me. She could walk away (she never would, but could) while we are family caregivers are in it for the long haul.

And I think what happens (with caregiving) is the cream rises to the top. Those that make it as caregivers adapt to their new environment (aka Darwin) and become a new and improved human being. The stress, the sleepless nights, the anxiety, the worry, the pressure and the fun, the laughter, the unbelievable situations we find ourselves in; lead us to become a better version of who we are. And this goes for all caregivers, whether you are caring for your loved one at home or in another setting. So caregivers, I salute you.

Exciting news

Okay I think it is exciting! I have been asked to contribute to a web site for caregivers. The web site is associated with a magazine for/about/by caregivers and former caregivers, but really does a "former" caregiver exist? I don't think so. As usual, I digress. The magazine is called Caring Today and I will figure out how to put a link on my blog for them.

This magazine and web site is incredible. Who would have thought such a thing would exist? Not me. If you get the chance I strongly recommend checking them out. No matter who you are caring for, there is something there that will strike a chord or bring a smile.

Paternity Test

My Dad has developed his personal paternity test. There are times I go in to check on him and he is laying in the same bedroom he has had for 12 years and is scared to death. I look into his eyes and they are "deer in the headlight". You know that look, eyes wide, fixed and then darting around looking for something, anything.

I have a recliner chair next to his bed. The idea is that I can sleep there when necessary and he can see me if he wakes up. We do this if he is not feeling well and I am scared or if he is scared. At this point I usually go in and say:

"Hi Daddy"
(This is where my continued naivete shows up. I fully expect that my using the title Daddy and he responding to the title, means he understands our relationship. HA! Rookie move, but I fall for it every time.)
"Who are you?"
(This is when I go "Oh shoot" and remind myself that no the title doesn't give him a clue.)
"I am Debbie, your daughter"
(Once again, holding onto that titile thing.)
"You are not"
(Well that was blunt)
"Yes I am Debbie"
(If I just keep repeating myself he'll get it. It was like I had never been around someone with dementia before!)
"No, Debbie is a baby"
(Okay I may be a babe (she says smugly) but I am not a baby.)
"I am Debbie but I am grown up"
(Once again I resort to logic (like that will work, duh))
"Who's your mother?"
(This is the paternity test.)
"Peggy"
(Thank God I know the answer.)
"Well then I guess you are Debbie"

I always feel this sense of relief (like I would not know my mother's name). But going through this process with him, reassures him that I am who I say I am. It also sets the tone for the day, from that moment I become the Oracle, the Delphi, the fount of all information and she who must be obeyed. Now, all that has its perks (I will admit), but it can be a little heady. It can also be exhausting. But you know what is more exhausting? Having dementia.

Washington DC

Recently I went to Washington DC to attend the Alzheimer Public Policy Forum. What an amazing trip! I went with a care provider from Anchorage and we were the "Alaskans". Everyone was so excited to meet "real live Alaskans" and we were thrilled to see what the other states are doing and the opportunities for advocacy. And my are there opportunities!

I am going to talk about each of these issues as they are so important.

Safe Return
This is a program that reunites family members when a loved one wanders or in the event of a disaster, like Hurricane Katrina.

• 4.5 million Americans suffer from Alzheimer's and 60% will likely wander from home.
• In 2006, 1,425 incidents were reported to Safe Return.
• Studies show that if not found in 24 hours up to 50% of those who wander will die.
• More than 148,000 participants have been registered.
• Sine the inception 12,000 wanderers have been reunited with their families.
• 88% of the Safe Return registrants are found within the first 4 hours.
• Caregivers are also given an identity bracelet.

Guess how much the program costs a year? One million. Chicken feed in federal funding terms. Guess what program is not part of the president's proposed budget for 2008? Safe Return.

Imagine as a caregiver, being in an auto accident with your loved one. You are gravely injured and they wander off. No one would know to look for them. Having the identity bracelet informs emergency responders that there could be another victim.

Personally, I am horrified. My Dad has wandered twice, luckily I live in a small town and our neighbors know us. I have actually given our local police station a picture of my Dad and information similar to "If found please return to...." My Dad was returned within minutes once by the police and once by a neighbor. I agree that vigilance is the first line of defense, but come on while we are on duty 24/7, we do have things to do and it only takes a minute.

So please think about this and if you feel in your heart that this program should be funded, send an email, write a note, tell your representatives in Washington, DC how you feel.

Snitch

My Dad's sister died today. She was his oldest sibling and he loved her dearly. I have decided not to tell him.

Shocking, yes. But let me explain my thought process. Dad has dementia and his short term memory is pretty much shot. If I tell him his sister has died, he will of course be sad and begin to grieve. Unfortunately, his grief and pain will last longer than the memory of why he is sad. He will then "fill in the blanks". I have no idea what he will come up with or how he will reconcile his negative feelings. I have decided to spare him this.

I do know my mother felt exactly the opposite. When my Dad's brother died, she decided to tell him. I counseled her against that move but she felt she needed to "orient" him. I thought it was going to be a disaster and it wasn't. My Dad took the news in stride and currently frequently asks for his brother and believes he is still alive. I guess you could say that when my Mom died, his brother's death went with her.

Some of you may feel that I should tell him and some may feel that I have done the right thing. I don't know. What I do know, is I am comfortable with the decision and know that I made it with only my Dad's best interests at heart. I think that is the ultimate litmus test for all of us. We do the best we can, we may not always make the best choice, but when the choice comes from our heart and our loved one's best interest is at heart, we can be comfortable with our choice.

I wish to all of you, comfort with your choices and know that whatever you do with love, is the right choice.

Event plus reaction equals outcome

I was reading a book on relationships, (I admit it I totally love these things!) and they were talking about a little formula:

E+R=O
(Event plus reaction equals outcome)

We as care givers live this little formula and most of the time we don’t even think about it. And we live it in so many ways.

• We know that if our loved one has a bad moment and gets cranky (come on who doesn’t get cranky), if we engage it will escalate. If we deflect, it will dissipate.
• We know if our loved one gets their clothes soiled, if we make a big deal about it, they feel shy and self conscious. If we just move them into clean clothing they accept our loving care.
• We know that when our loved one gets confused and scared and starts asking questions, if we patiently answer the emotion not just the question, they quiet and become unafraid.
• When our loved one calls us by the wrong name and looks for family that is long dead, if we insist on orienting them to the time and place our loved one becomes fretful, scared and sometimes hostile. By answering their call for attention we have met their need.
• When we allow our need to “be right” to be second to their need “to recognized and acknowledged as having value” we all benefit from the interaction.
• When we let go of the baggage from our past relationship with our loved one and forge a new relationship based on the present, we are given a wonderful gift of forgiveness.

The sweet predictability of dementia

One of the things I have learned about dementia, is there is a predictability. Yes, that is a nice of way saying "He does the same things over and over again", but it is more than that. Not only does my Dad ask the same questions over and over again, there is a pattern to when they are triggered.

For instance, if I meet my husband at his work to pick up Dad we drive by the animal shelter. We now go through a routine conversation:
"Look Dad there is the pound. Want to go look at the animals"
"No way" he says emphatically "You'll just bring home another cat"
" I know Dad but the 3 of them are getting along so well we need to mix things up"
He laughs and says "You have 3 cats. No wonder they are everywhere"

We do this every time we go to my husband's work place. This is another opportunity for me to learn how to communicate with my Dad. I could avoid our conversation (because I know how it will come out). But instead, I relish it. I know we will have this wonderful give and take. I will talk, Dad will respond, he can actually follow this conversation! This is huge as his short term memory is so shot it is hard for him to follow his OWN sentences, let alone the give and take of conversation.

My Dad's disease has taught me so much about my Dad, my life and what is important. Again, the conversation itself is not what is important, but the time we had together laughing about my cat collection. Just look at the joy and the wonderful moments I would have missed, had I said, "oh no, don't go by the pound because we will have to talk about cats, AGAIN". Now, I try and find a way to actually drive by the pound.

Check your ego

Caregiving is an enterprise that does not allow us to become smug. A smug caregiver is not an aware caregiver. Come on, admit it, sometimes you just feel good about what you are doing. The sun is shining because you are doing something worthwhile. The birds chirping outside the window are singing (or tweeting) your praises. If there were water on the ground, you might be tempted to try and walk on it. We have all felt it, when everything just goes smoothly and you are on top of your game.

Guess what? It is not going so well because you are the hottest thing out there since sliced bread. Nope. It is going well, because of your loved one! Yep. Think about it for a minute. We put processes and schedules together not for us, but for our loved one. It is not about us, it is about someone else. It is about loving someone else so much you are there for them. They may not be able to tell us, they may not be able to show us in conventional means; but they do you just have to know where to look.

So take the strokes from family and friends. Enjoy your role as a caregiver. You are giving an amazing gift to someone, but you are receiving too. Remember to thank your loved for allowing you this special time with them. Give them a kiss or a hug and tell them what this means to you.

Long Time No Hear

First of all, sorry I have not been around for awhile. There have been a few developments both on my blog and at home.

Someone hacked into my blog and has made it difficult for me work on it. (pout) I don't know who the person or persons are but let me tell you/them, I do not appreciate your interference. This is not a money making enterprise and there will be no financial reward for you. Any psychic reward you may be after is at the expense of a few folks trying to hold one another up while we go through some unusual life experiences. You would probably get more enjoyment messing with someone with a little more computer knowledge and allot less vulnerable. (It is not fun to kick puppies, much more challenging and rewarding to pick on a big dog.)

Off the soapbox and back to caregiving. I just returned from the National Alzheimer's Public Policy Forum, what an amazing experience. Tons of dynamic people all working towards a common goal, finding a cure and making caregiving easier. I don't like to think of myself as an "Alzheimer Only" caregiver. I like to take a broader view as we are all in the same boat. We have the same stresses, many of us are fighting battles with diseases knowing we are going to lose and we all love those we care for. Same, same, same.

And finally, my dog has liver failure. He has rallied but he has been one pretty sick little guy. We are talking to the pet food companies to see if there is a connection between his liver disease and the recent recalls.

So all in all it has been a busy couple of weeks and I have been negligent, I am sorry for any concern that I may have inadvertently caused. Also, rest assured this blog is not a whim that has lost its appeal or I have moved on. Quite the opposite in fact. I find myself now going about my day and thinking "Oh I should write about that". So hiatus over! I'm baaaaaaack.

Lunch Date with Dad

My husband watches my Dad in the morning and brings Dad to my workplace on his way to work. We have been using respite to avoid taking Dad out in the cold so it has been awhile since we have done the "switcheroo".

On our way home Dad said he was hungry and had to go to the bathroom so I decided to make a stop. We went to a small local Mexican restaurant to eat and potty. Dad and I sat and had a lovely conversation while waiting for our food. He thought we were in Mexico and was amazed at the wonderful English everyone in the restaurant spoke. He was also amazed that they all looked so.....American. I expressed my amazement as well.

I realized Dad was really enjoying being out and that it had been a while since he and I went out alone. He said over and over again how nice it all was. (See another upside of Alzheimer, not only do the questions repeat but so do the compliments!) Realizing I have been remiss on his outings I suggested going to the Senior Center on Wednesday. He looked at me and very indignantly told me "he was NOT ready for that'. I said "OK" (just as emphatically).

Trying to convince him it would be a good idea, I suggested he could go and meet a woman. He explained he was not interested in any "old broads" (I guess feminism has not happened in his timeline). I suggested finding a "Sugar Momma". He told me any woman he was interested in would be moving too fast for him. I said then she could easily "catch him". He looked at me and very seriously explained that she would "whizz by him" and he had no hope.

Well, the whole conversation just struck me as funny. There were are having this lovely lunch. Half the time he thinks I am his sister and the rest of the time he thinks I am his wife. The WHOLE time I am trying to talk him into a little feminine companionship. I was so clearly reminded of one of the biggests lessons I have learned from caregiving. The actual content of our interaction doesn't matter, the facts/the figures are irrelevant, what does matter is how my Dad feels about it. If we had fun and laughed he goes away at peace and happy inside. If I spend the time correcting him on facts/figures/manners he goes away edgy and unhappy. So what was the goal of our lunch? (besides eating some yummy food) To enrich my Dad's life or another opportunity for me to lecture? I choose enrichment.

Can I take it pass/fail

When I was in college (a gazillion years ago or 20 give or take a few) we had this lovely option of taking one class pass/fail a semester. I did not discover the joys of this experience until my Junior year (I think I might be slow). But once I did I liberally partook of the experience. My dreaded Geology (science requirment) PASS. Russian - PASS.

Now that I am no longer in school, grades and pass fail no longer seemed to be a part of my life. But then a fellow caregiver mentioned that sometimes he feels that taking his beloved wife to the doctor feels like a Caregiving Final Exam (I am a little liberal here with the wording, but I have the spirit I hope). We take our loved ones in and there are blood TESTS, physical EXAMinations, eye TESTS, etc. You get the gist.

I always knew I felt a little anxious about the doctor's visit. Am I going to measure up? How am I doing as a caregiver? The results of those tests on our loved ones become milemarkers and ways that we measure or success, or lact of success as a caregiver. What stress we put on ourselves! I did not even realized that I looked at these visits so critically, as a measure of my performance until I heard someone else verbalize it. And wham! It hit me between the eyes.

But now I have thought about it and realized life is about little tests and not just for us caregivers. Here are some examples:

• I have a job, (failing there is called getting fired).
• I cook for my family (failing there is called food posioning)
• I have friends (failing there and you become a social pariah)
• I knit (failing there is called adding a desing element)
• I love cats (failing there is becoming the weird cat lady with 30 cats)

So yes, as caregivers we can strive for straight As on our report card (lab tests, etc) but ultimately our success is measured by our loved one. Are they as happy as we can hope for, as healthy as we can reasonably expect and as safe as we can make them? If so, then celebrate that success. Celebrate this time with your loved one. Celebrate the "us" that has been newly carved in your life and their life.

It is lonely at the top

Here is a big one for those of us privileged to care for our loved ones.........loneliness. Yep, I said it, L-O-N-E-L-I-N-E-S-S. We all feel it. And we all learn how to deal with it. But that path to learning how to deal with it, is uphill both ways (just like when your parents walked to school) with big ole boulders that have to be climbed in order to continue on the path of acceptance. Some of those boulders are:

• Acceptance
• Fear
• Isolation
• Shame
• Is it really worth it to go anywhere, do anything?

Yes it is. Making the effort, getting out there allows me to feel connected with my peers. I feel less isolated and the loneliness begins to fade.

I remember and count my blessings, I had 30 plus years with loving supportive parents and this is my opportunity to care for my Dad. The loneliness is replaced with a feeling of peace.

I interact with my Dad on his level. We play cards. We start out playing poker and mid hand it becomes gin and then we finish up with poker again. No big deal, it is not about the game it is the moment. I etch that memory and the process of capturing the moment chases the loneliness away.

I sing with my Dad. Silly songs from my childhood. And every once in awhile, it will spark a memory and we can share a memory. That shared memory, that moment erodes some of the loneliness.

I am not perfect. I am truly far from perfect. But I have actively chosen to fight the gloom and doom of caregiving with positive thoughts and actions, with fun, love and laughter. I hope you can too.

Morning Routine

This morning I had a flash of wisdom or something similar. This morning while I was getting ready for work and getting the kids ready for school Dad woke up. This seems like a simple everyday occurence, which it was, but I started thinking and I realized every morning my Dad and I follow the same routine.

After a night's sleep most of us wake up a little groggy, need a few minutes to get our act together, have our coffee, whatever your personal poison, but it is that morning routine that gets us moving. Without that routine, the day seems, flat, unhinged, possibly even stressful, sound at all familiar? Well I finally realized every morning is like that for my Dad. He wakes up and doesn not know where he is or how he got there. How terrrifying! Can you imagine waking up in the Twilight Zone EVERY morning.

Unconsciously my Dad and I had established a routine. He wakes up and finds me, wherever I am (bedroom, bathroom, kitchen...). When he sees me he asks who I am and where he is. I would explain that I am his daughter Debbie. Now I understand that doesn't mean anything to him and he doesn't remember being married, let alone haivng a child, but I still say it. I usually tell him a story from when I was growing up or he was growing up as proof of our relationship. If I can get him to see that we have some common memories (my reminiscences are not memories but memories of stories) he begins to feel safe. He knows he is with someone that knows him and I have proved it with details of his life.

The second hurdle is where he is. I explain that this is my house and he lives with me. I explain that he has an illness that causes him to forget things and get confused and that is why we live together. At that point I usually tell another story, again reassuring him that we have ties and I know WHO HE IS. I also reassure him that he is loved and safe.

Thinking about these questions and answers I realized, he really doesn't care where he is or who he is with. He is asking am I safe? Am I with people who will care for me? Should I be anxious? I have learned that storytelling answers these questions that he doesn't even know he is asking. So tomorrow, I will tell more stories and I will remind myself that those stories create a safe place for Dad.

To pee or not to pee

I have not been feeling well. Seems like everyone I know is sick. But I was getting Dad changed today and he was a little fractious and I had to insist that it was better to be clean and dry and started quoting the Bard to amuse him. Here is what I started:

To pee, or not to pee: that is the question:
Whether 'tis nobler in the pants to suffer
The moist and cold of damp underwear,
Or to take arms against a sea of pea,
And by opposing change them? To change: to clean;
No more; and by a change to say we end
The diaper-rash and the thousand natural shocks
That flesh is heir to, when wet
Devoutly to be wish'd. To change, to clean;
To clean: perchance to dry: ay, there's the rub;
For in that cleansing what dreams may come
When we have shuffled off this wet clothing,
Must give us pause: there's the respect
That makes pleasure of dry and warm;
For who would bear the cold and moist of pee,
The caregiver's right, the dry man's happyy,
The pangs of damp garments, the chill of wetness,
The insolence of the wet and the odor
That patient denies a need of driness,
When he himself might his urine make
With a bare bum? who would object,
To grunt and sweat in a bathroom,
But those that change the wet,
The undiscover'd dampness from within
No caregiver shuns, it puzzles the will
And makes us rather bear those ills we have
Not seen as yet
Thus squeamishness does make cowards of us all;
And thus the native feelings of revulsoion
Is chased o'er with the vivid cast of love,
And changes of great volume and mass
With this regard our senses are awry,
And lose the smellof lysol - it cannot hide
The scent of urine, in thy pants
Be all my changes remember'd.

It is silly I know and a bit over the top, but it kept us amused!

What to do when the caregiver is ill

I am sick, seems Dad gave me his cooties. So while I am writhing in a pool of self pity and noxious germs I figured, might as well share my good fortune with the world.

Yesterday I came home from work early and croaked to our respite lady that I was home. Dad looked and me and said "Hi Stella", when I returned the greeting, he looked alarmed and said "you aren't Stella". I laughed and said no, I am his daughter Debbie. I got a look but the respite lady trumped me with pudding.

I collapsed on the couch in a puddle of misery. Too soon, it was time for the respite lady to leave and I got up to crawl, oops, walk with her to the door. We talked with Dad for a minute and he was shocked that our respite friend was leaving. I think he was afraid to be left alone with someone as obviously incapable as I was. I tried to laugh it off and told my Dad that she was leaving the infirm and feeble to fend for themselves. He thought about it for a minute and asked "Who is infirm". I cheerfully croaked that I was most definitely infirm. He thought for a minute and said "Then I must be feeble". He shrugged and went back to his pudding with a big smile.

Adventures at the Division of Motor Vehicles

I lost my driver's license in my car. Sad isn't it? I have a cup holder and a little slidey door that covers it up. For some bonehead reason I put my license on top of the slidey thing and............ you guessed it. I slid it back and my license dropped into the bowels of my car. Knowing it is illegal to drive without a license I drove directly to my local DMV to replace it.

I am not sure what was going on, but the place was packed. Dad and I found a seat and proceeded to wait. After we had gone through the contents of the diaper bag, snacks consumed, magazines read, boredom set in. Dad began to look around and realized the place was packed with soldiers.

The soldiers were all very nice young men and smiled nicely at my Dad as my Dad stared at them. Soon Dad leaned over to me and whispered, or so he thought, it was more like a dull roar,

"Who are those people?"

I explained that they were soldiers. My Dad replied with "From what country?" I explained they were American soldiers and they were wearing a new uniform for the new war. BIG mistake. Dad became a little agitated and wanted to know what war. I explained that we were at war with Iraq. He looks at me very seriously and says
"Why would we be at war with THEM?"

At this point the soldiers cracked up and started sharing the story with others that had not heard. The whole place is laughing and Dad is oblivious to the riot he is causing. He again asked about the uniforms. I explained that back in 1950s during the Korean war, they had different uniforms (Dad was drafted during the Korean War). He looked at me quite seriously and said
"What do you mean BACK in the 50s?"

I couldn't help myself, I started to giggle and the place went nuts. I gathered my composure as they called our number and reassured my Dad we had not been invaded and all was well.

The nicest part is all the soldiers either spoke to my Dad or patted him on his way out the door. He felt warm and loved and they felt apart of something special. And it was special, because I allowed it to happen. I allowed my Dad to laugh, be loud, be outrageous, let him be who he is NOW, not who I wish he were or who he would be if he did not have dementia.

As promised..................

The diaper bag. Yes, the dreaded bag. Or at least it was for me. There was something about "going back to carrying that bag" that I dreaded and fought. Boy did I fight it. But after one gastrointestinal event at the store where I was forced to buy, disposable underwear, pants, socks and shoes; I got the bag.

Now here is an admission. I am a card carrying handbag junkie. Yep, I am one of "those" women that has a closet full money all in the shape of purses. I have all the boys, Louis Vuitton, Coach, Brahmin, Prada, Cole Haan, all the boys are represented. This is impressive when you hear I live in a town with VERY limited shopping opportunities. My girlfriends and I play "Name that Handbag", you know the old tv show, I can name that Handbag in 4 designers, I can name it 3, etc. Sad but true.

Once I became accustomed to the idea of going back to carrying a diaper bag, I realized a handbag shopping trip was required. Oh goodie, that is me, the eternal optimist always looking for the silver lining. So off I went and I found a lovely bag, unfortunately it was not quite right for a diaper bag, but was beauuuuuuutiful.

I finally settled on a nice backpack style bag. It is comfortable, allows me to hold onto my dad as it is hands free while still carry my fashion statement (or handbag). I love this bag. It is not the most expensive but it is soo practical and fits us perfectly. I have learned through trial and error the perfect "Dementia Bag" will contain:

1. Disposable underwear (at least 3 pairs as sometimes what you think is the main event, is just a warm up.
2. Socks, gravity my dear, gravity.
3. Pants, sometimes the underwear just doesn't hold everything it should.
4. A snack. Very important as you never know when the munchies will strike and I have used candy as entertainment. I was refinancing the house and you know how long that paperwork takes! Dad was with me and I would sign, unwrap a candy, hand it to him, sign, unwrap a candy, repeat.
5. A drink as the snacks can make you thirsty.
6. A shiny toy. Sometimes Dad gets fidgety, if I can give him some sort of one piece puzzle to manipulate it will keep his hands busy.
7. An appropriate magazine to read aloud with lots of pictures. Once I realized that Dad's short term memory is gone, so if I find a magazine issue he likes I buy a few and keep that one around.
8. A pair of glasses. These glasses are for comfort as he wears his glasses, but he likes to know they are there. I pull them out, show them to him and he is happy.
9. They have disposable lens cleaning pre-moistoned cloths. I keep a few in there as the snacks make our glasses dirty.
10. Breath mints, halitosis seems to be an issue these days.
11. Diaper wipes in a ziploc baggie, see number 1.

My Dad is not an arts and crafts kind of guy

He has never been a "joiner". He has always balked and ridiculed group activities. This had presented a dilema to me as a caregiver. How was I going to get this guy to participate in group activities, keep him interested, keep his mind functioning. Well, I wish I had the answer! I am laughing at my own ineptitude on this one! I have searched for the perfect activity, the silver bullet so to speak and I am still searching. But I will share what we have tried and the outcomes:

• We went to an adult day center for a hour together. We had a lovely tour and my Dad just kept asking "Are we done?" "Can we go home now?" This was maybe a month after my mom died and I was trying to figure out how to go back to work. I said okay and took him home and he took a nap. When he got up from his nap he looked at me and said "You will never believe where your mother took me today." Scratch the day center.
• We went to the Senior Citizen Center. Lovely activities, really mobile, bright, interesting seniors all over the place. I was having a grand time. Dad decided it was time to go. On the way out he remarked "I would lose my mind if I had to go to a place like that." Scratch the Senior Center.
• We would go to church together. Dad would introduce himself and me as his bride, which didn't bother me, but caused some concern amongst some of the parishoners. As his dementia increased, a nice quiet church service was no longer appropriate as Dad would get loud, fall asleep or get up and leave in the middle. Scratch church as a social activity.

What I discovered is Dad likes to be read to and watch risque comedies. The trick is NOT to park him in front of the tv, but talk about the show, use it to spark conversation. One of the advantages of DVDs are I know which parts of which shows he finds the funniest and can ensure he catches that part. He sees my 16 year old son as a peer and will make comments about the girls and have a real man to man conversation. The 16 year old enjoys being treated like a "man" and they laugh.

Reading out loud is a little tricky in public places. You never know what you will get into. For instance we were waiting in a doctor's office and I picked up Scientific American (my Dad used to subscribe). I found a lovely article on Abraham Lincoln and we began to read it. Pretty soon we were discussing slavery and soon my Dad thought we were in the middle of the Civil War. So now I ensure I always have a nice suitable magazine in my diaper bag. Tomorrow I will talk more about the contents of our diaper bag.

Dad has a cold

Like any of us, when someone does not feel well, they are cranky, tired, cranky, in a fog, did I mention cranky? Yep, Dad is cranky. The wonderful thing about Dad being cranky is I see a real growth in my response as a caregiver. In the beginning Dad would get sick and I would panic. My thoughts would range between call the paramedics, I need help immediately, to well he might be really sick, what should I do. Basically I was either paralyzed by indecision or in frantic motion.

Tonight I realized, Dad has a cold. We all get colds, I am going to sit back and see if he can beat this. I am actually pretty proud of this decision. I know, sounds silly, but this is really a huge step. In the beginning of his dementia he was violent and angry, well duh his world was collapsing and we didn't understand it. He was paranoid, hallucinating, it was horrible. If he were cranky, it was time to hide until it blew over. This time we are so in control of his meds, sleep schedule, entertainment, activities, etc. that his cold is not the end of the world. We don't have to be afraid. I don't have to sit by his bed. I will watch and see if he gets better.

What a blessing it is to find myself able to provide, tea, honey, vitamin C, extra rest, extra TLC and without fear. I look at all of us and find myself smiling to realize how far we have come over these last few years. So to new caregivers, I say hang in there. To the old hands out there, I say I am proud of you and how far you have come on your journey. Sit back and take a minute to see your progress and celebrate it. Well Done!

Dad needs to help

I had another revelation today. Drumroll, please. My Dad needs to parent me. Again, duh of course. My Dad has been a caregiver for our family all my life. My cousins would go to our house when they had been drinking and hide out from their parents. Mom would make up the couch while Dad called their Mom and said they were spending the night with us, not to worry. Whenever kids would show up at the house, out would come food and games and all would be welcome. Why would I think this need to give would end just because Dad is a little confused?

Just today we were talking and Dad wanted to go home, go back to school, get a job, etc. It dawned on me, that what he was really saying is

• I need to contribute.
• I need a function.
• I need somewhere to go.
• I need to care for you.

These are basic functions each of us completes daily. I felt so silly. Here I am thinking "Lucky Dad you are on a permanent holiday" and he is saying "I am bored, I need to be needed".

How to fix this? I explained that he is paying his way. I told him we use his social security to pay the mortgage and if did not have it we could not meet the mortgage. You could see his chest swell with pride. In one fell swoop he became responsible for this house. He also helped me clean. Of course, he would get bored and side tracked and wander away, but that is okay. This is NOT goal oriented cleaning. The idea is to give him a sense of purpose not to pass a white glove test.

Witness Love in Action

As a caregiver I rarely get to sit back, coast and watch someone care for their loved one. I am usually in the middle, getting meds, cooking, checking underwear for packages, listening for obstructed breathing, is that a cough/gasp/choke/gasp..... Always on alert. Always ready to spring into action. Sometimes I think all I missing is a red cape and a big C "Caregiver" on my chest.

I had the pleasure of working with a fabulous group of men and women this weekend. This group all went to our capitol to speak with our state legislature to request financial aid for in home supports. This is one of the most dynamic, fun-loving, compassionate, intelligent groups I have ever had the pleasure to work with. One of the attendees, a caregiver for her mom, brought her mother with her.

Watching the loving care this woman lavished on her mother was so moving. The gentleness, the humor, the compassion made my heart swell with pride to be a part of it. What I found most fascinating, was how humble the daughter was. She would express the self doubts, the frustrations we all feel as she lovingly zippered her mom's jacket. The unknowing care, caresses were so reassuring to everyone around us.

What I learned from this woman was the love that is there between a caregiver and their loved one. Oh, we all get frustrated, we all get tired of being together, but even at those moments, it is love that comes through. I only hope I can live up to the model that I witnessed first hand this weekend.

Happy Valentines Day

To all the spouses that are celebrating Valentines with their loved one, Happy
Valentines. Even if your loved one is unclear on the day, confused your name with a relative, cherish the way they light up when you enter the room and know they love you.

Happy Valentines Day

Pay it forward, backward, sideward,

Just do it. What mix of slogans, huh?

To be honest I hated the movie Pay it Forward, but loved the message. If you do what you can, when you can, you are in a sense building a karmic credit balance. Just imagine the power of everyone doing something for another person, without regard to who, what, where or when; just take the opportunity and do it! Sometimes we will be the recipient and some times we have the opportunity to give to others and possibly even folks we do not know.

What does this have to do with care giving? Everything and not in the way you think. It is not the act of care giving that is the gift, I am talking about care givers taking care of one another. Now hang on, and just read on.

I can give a simple example. I had my dog at the vet. My dog is not really a dog, but more like a money pit on four legs. While I was waiting for my bill to be totaled. I know there were accountants being called in for overtime, financial analysts were ticking away, logarithms were being plotted, but that is another story. Suffice it to say, I was waiting and waiting and waiting. Now be honest, when sitting in the waiting room we all hear each others stories and pretend we don't.

A woman rushes in to pick up her cat. She is obviously distraught and has explained 3 times that her Dad is in Intensive Care and may not wake up, she has to go on a business trip and needs someone to watch the cat she is picking up at the vet. Usually a tech at the Vet's office does the sitting and expressed concern that she may not be able to sit for the cat at such short notice. The woman is on the brink, this comes from one that is frequently on that brink and can recognize the symptoms. I walk over and explain that my daughter and I will watch her cat. At first she is (quite naturally) alarmed/confused and settles on desperate. I explain that I am a care giver, I know her stress, we have animals and we will do it for her. She has enough on her plate and does not need to worry about the pet. She cries.

I have been there twice. Once when my cat had first developed a terminal illness and my mom was in the hospital, grandma in the nursing home, Dad was with me and the vet suggested I come back at 3:00 to pick up the cat. I lost it. I mean L-O-S-T I-T. The poor vet's eyes became huge and she reached over, patted me on the shoulder and told me to pick up the cat the next morning there would be no charge to board him.

I guess what I am saying is, I have the lovely opportunity to pay back the vet's kindness, by watching a cat for a few days. And if the same situation were to occur again, I would volunteer again. I don't see that I "owe the universe a kindness" or something like that. I see that I have been given the wonderful opportunity to help another caregiver. We give so much of ourselves as caregivers and so often fail to care for ourselves. Just imagine if every caregiver out there, gave other caregivers a simple gift or gesture (like watching a cat eat) how our burdens as caregivers would be lifted.

How much simpler would your day be as a care giver if, a neighbor offered to carry in your groceries, a coworker brushed the snow off your car, you brought cookies to your care giver support group, you called a caregiver for their birthday/valentines day, sent a caregiver a valentine... These random acts of kindness are wonderful when given to the world at large, but I am suggesting that if we as care givers focused on providing that support to one another (care giver to care giver), our loads would be lessened and our ability to care that much richer.

Academic Credit for Dementia

My 17 yr old son. Boy doesn't that make me sound OLD!!!!!!! Either way, he came home from school and my Dad met him at the door. My Dad wanted to know why he was coming here. My son explained he lived here. My Dad began responding in rapid fire:

Why do you live here?
Did you get thrown out?
How long ago did you get thrown out?
What did you do to get thrown out?
Oh so you aren't getting along at home"
So you live here? Why?
When did you get thrown out?
What did you do?

I finally went out to rescue Buster. I brought him into the kitchen and poor Buster had this shell shocked expression on his face. I told Buster next time tell his Grandpa he got a girl pregnant. Pretty soon Buster and I are giggling and each story is worse than the next one. Finally, we fall upon a way for him to get credit. His school has a creative writing requirement. I told Buster to write down some of his "cover stories" we give Dad and submit them for credit. What a hoot, who would have thought he might get high school credit for care giving!!!!

Superbowl Sunday

My dad does not like football. At all. Ever.

My mother loved football. With a passion. I don't know if it was she loved football players or the game, but she enjoyed both. Every year she would have her very own Superbowl Party. No one would be invited. She would go into her room, load her bed with chips, dip, soda, the remote and the phone. She would watch the game and indulge herself all day long. This was a ritual.

When I provided her with grandchildren, they would be invited to her party. They would spend the day with grandma and enjoy the goodies and the kinship. Once their tummies were full they would move on to grandpa for amusement.

This year, grandma is gone and grandpa doesn't understand the Superbowl. But for some reason I was compelled to have a Superbowl Party. I bought junk food, sodas, all of it. I laid out the spread, made sure Dad's pants were dry and had him watching TV with me. I told him we were going to watch the game and he actually seemed interested.

Twelve minutes before game time the neighbors came over and wanted to know if they could watch the game at our house as they don't have cable. So now, out of the blew, with 12 minutes notice, I am hosting the neighborhood super bowl.

You don't know this but we live in my parent's house. All the goodies I bought for our family of 6 will now feed 12 as game snacks and the sodas I had stockpiled will quench the throats of the partiers. And the house that has seen 12 solitary Super bowl parties, will be hosting a super bowl party for the neighborhood. Our world that seemed so small and sad and consumed with death, dying, grief and illness, has been replaced with a living room full of boys yelling at the TV and celebrating life and football. Life and football are truly gifts.

The Greater Good

Caregiving has created a new appreciation for spirituality for me. I have spent hours pondering some of the most difficult questions there are, the existence of a greater power, is there life after death, why does bad things happen to good people, why don't bad things happen to bad people, why does the nice grandma die first, does it really matter what church you attend, how can something as wonderful as chocolate do such bad things to my thighs, you know the burning questions of our times. And I have come to realize:

1. There has to be more to life than this, there has to be a greater understanding of life and its mysteries, than I have.
2. I hope there is some type of existence after death because I miss my mommy and I want to share everything she has missed.
3. I think devoting time to a devotional life be it formally in a church or gazing in wonder at the perfection of a flower in a field is important, not the who, what, where, why and when.
4. Bad things happen to good people, hence number 1.
5. Nice grandma's dying first, see number 1.
6. Chocolate teaches moderation.

By simplifying my life through coming to grips with a "greater good" or "higher power" or "divinity", giving control of my life to that being and accepting that it is not my place to judge others I have been able to make peace with myself and the twists and turns that life is taking.

I got in trouble today

Dad had gone down for a nap. I hate to admit it, but a piece of me was kind of excited. I had got a latte on the way home, the kids were at school, hubby is at work and Dad was going to sleep. I drank my coffee, watched the birds through the kitchen window. Peace. Luxury. Quiet. Rest. Talk about recharging your batteries.

Before I was halfway done with the coffee, you knew something had to be coming, Dad comes down the hall.
"Hello. Who's home!"
"Just me Dad"

He comes around the corner and sits down next to me. I smile, looking forward to a wonderful father/daughter moment...........

And he says
"I really don't like it when someone craps in my toilet."

I just about spit out the coffee. My eyes are huge and I say "WHAT!"

He explains (with full self righteous indignation) that he does NOT appreciate someone using his bathroom and leaving it full of crap (his word here) and not flushing it. It is disrespectful, and on and on, and on. Knowing that he and I are the ONLY ones home (and frankly you could not pay the kids to step foot in his bathroom, ick factor and all that) I KNOW who did it, but cannot say.

"Ah, excuse me Dad, but the mannerless wonder, would be YOU."

So I apologized for my bad manners, my disrespect and my lack of breeding. I explained that obviously my parents did not raise me well and I would try harder in the future. He actually "harrumphed" me and stalked out muttering to himself.